BUFFALO, N.Y. -- Parents and adult caregivers of pediatric
cancer patients prefer personal consultations with trusted health
care providers over online sources for information about their
child's illness, according to a University at Buffalo research
Despite the accessibility of online medical information, the UB
study found that parents not only distrusted information found
through the Internet, they often feared what types of information
they might encounter.
"Respondents were telling us they were uncertain of the
information online and that they were afraid of the unknown," says
study co-author Elizabeth Gage, PhD, professor of community health
and health behavior in the UB School of Public Health and Health
Professions. "They didn't want to run into stories about 'the worst
Gage, along with Christina Panagakis, a graduate student in
sociology at UB, and colleagues at Roswell Park Cancer Institute,
interviewed 41 parents of pediatric cancer patients in the U.S. to
learn how caregivers use the Internet as an information source
about their child's illness, its prognosis and potential treatment
The study, "The Devil You Know: Parental Online Information
Seeking after a Pediatric Cancer Diagnosis," will appear in the May
issue of Sociology of Health and Illness.
Beyond a distrust and fear of health-related Internet sites, the
study's findings also suggest that online searching for information
about an illness might vary between patients dealing with routine
conditions and those faced with life-threatening problems.
"The likelihood of a patient going online might depend very much
on context," Gage explains.
Previous studies looked at what Gage described as routine,
contested or stigmatized illnesses, while her research contributes
a piece of knowledge relative to severe pediatric illnesses.
"One of the reasons we were interested in exploring this issue
is that so much research and media coverage had examined how the
Internet was breaking down barriers between patients and caregivers
and their physicians. But that wasn't that case in our study," Gage
says. "Perhaps because of the severity of the diagnosis, parents
and caregivers preferred to receive their information from sources
other than the Internet."
The information-seeking behavior of parents and other caregivers
appears to be influenced by the volume of available information,
Gage says. Patients with routine illnesses might find minor details
online that better inform their conversations with health care
providers, but respondents in this study who were confronting a
more serious diagnosis were overwhelmed by the often conflicting
sources of online material.
"Families in our study did not know where to begin or how to
sift through such a huge mound of information," Gage said.
Those who did look for information through the Internet tended
to limit their searches to what they considered more credible
sources, such as medical journals and hospital libraries, the study
"A lot of families used the Internet to establish connections
with other families in a similar situation, as much for emotional
support as for reasons to share medical information," Gage says.
"However, many families ascribed a certain expert status upon these
individuals, almost elevating the experience of what they call 'the
veterans' to the same level as that of a trusted hospital-based
Gage's photo and bio are available here: http://bit.ly/FPLli1.